(12 years, 8 months ago)
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Baroness Browning
To ask Her Majesty’s Government what assessment they have made of the implementation of the Autism Act 2009 and associated autism strategy.
Baroness Browning
My Lords, I am very grateful to all noble Lords showing an interest in this debate this afternoon, and particularly to the Minister, who I know takes the Autism Act 2009 very seriously. I have brought it forward at this time because the Act needs to be kept under review. There are certain aspects that I want to air today particularly as far as the implementation of the strategy is concerned. I hope that the Minister will be able to take away some of the concerns that I have about it.
It is important to re-emphasise that this Act, introduced by my dear friend the right honourable Cheryl Gillan MP in another place, is the first, and I believe only, condition-specific legislation on our statute book. As a result, we have a particular regard for the reason why it came about. It was because, as a spectrum, autism is a complex condition, which has only begun to be understood in recent years, and because even those who present as more able on that spectrum can deteriorate in areas of mental health, particularly when they progress from childhood to adolescence and then on to adulthood, if they do not receive the appropriate packages of support, much of which will need to be lifelong for many, even the most able. It was for that reason that Parliament singled out the condition of autism in order to put this legislation on the statute book. The Department of Health has responsibility not just for implementing it but for overseeing it, so that this legislation carries out Parliament’s wishes in the responsibilities of the Secretary of State to,
“prepare and publish … a strategy for meeting the needs of adults in England with autistic spectrum conditions”,
and to issue guidance to local authorities and health bodies to secure the implementation of that strategy. There is also a duty on local authorities and health bodies to act under that statutory guidance.
I would like to begin by raising issues that are in the current strategy, on which I hope my noble friend will be able to answer my questions or, if not, to write to me afterwards. The first is to do with partnership boards. Page 29 of the guidance raises the matter of partnership boards, but in the guidance these are not to be required in every circumstance; there is simply a requirement for partnership boards to be there and to be a body where people with autism and their families could participate. It is not statutory that they should. Will partnership boards be monitored in terms of their being set up, and what is the Government’s position now on partnership boards including those with autism and their families? We know that this is one of those conditions where carers and those who can self-advocate in particular are in a key position to add to what is needed in their own services.
I would also like to raise with my noble friend the question of IQ, on which I have put down Written Questions. Page 15 of the guidance states:
“Assessment of eligibility for care services cannot be denied on the grounds of the person’s IQ”.
This is a very old problem which particularly affects those who present with Asperger’s or the more high-functioning Kanner’s autism. I apologise; I should have declared my interest as vice-president of the National Autistic Society. Having been in another place for 18 years, I have dealt with a lot of casework—not just my own but also that of other Members of Parliament. IQ has been the reason social services and other statutory bodies have denied people on the spectrum the right to an assessment and thus to appropriate services; I must tell my noble friend that I still receive casework of this nature today. The practice is clearly now illegal. In fact, I believe it was illegal under existing legislation affecting social services and their requirement to assess people. I ask my noble friend to take an interest in this, particularly for people who have previously been assessed but did not necessarily have IQs under 70 which would have determined them as learning disabled. It is still a problem in some areas. This legislation should have put a halt to that: my interpretation of the strategy is that it is quite clearly illegal.
I also raise with my noble friend the matter of diagnostic leads in NHS bodies, featured in the guidance. Page 15 states that there will be a clear pathway to diagnosis in every area by 2013. Page 16 goes on to say that:
“Each area should put in place a clear pathway for diagnosis of autism, from initial referral through to assessment of needs”.
Page 15 also states that,
“the end goal is that all NHS practitioners will be able to identify potential signs of autism, so they can refer for clinical diagnosis if necessary”.
I know that we are waiting for NICE guidelines to be published on this. I do not know whether the Minister can give us some indication of the timeline as far as the NICE guidelines are concerned. However, in view of the omission in the guidance of foundation trusts and the implication of the Health and Social Care Bill regarding the bodies which will replace PCTs, I wonder whether my noble friend could tell me how the requirements of the autism strategy are going to be met. Are we in danger—and I hope I am wrong in my interpretation of this—of having postcode lotteries in terms of the requirement of the strategy? For changes in health service organisation, those requirements under pages 15 and 16 may well not be achieved as far as the health bodies are concerned. How are these diagnostic leads and their work to be benchmarked? In other words, how are we to assess how capable they are of doing that work? How are we to assess the geographic spread, bearing in mind that there are many cases of autism among adults that are quite complex?
I am not saying that it is easy to diagnose. Diagnostics across the autistic spectrum, including for children, require people with experience of working regularly with those people. However, by the time people enter adulthood—and sometimes people present quite late in life—there can be really complex needs. A mental health condition commonly overlies an autism diagnosis. I point out to my noble friend for the record—I know that he will know this—that autism is not of itself a mental health condition. However, we know—this applies as much to the more able end of the spectrum as to those with more complex Kanner’s autism—that many learning to get by in life as adults often present very strange behavioural patterns. These are not necessarily psychotic but all too often people who are inexperienced in diagnosing find it difficult to disaggregate rather strange autistic behaviour—I choose my words carefully—from what might sometimes be misinterpreted as a psychotic basis of need following a clinical psychiatric diagnosis. Sometimes, of course, both conditions apply and sometimes it gets more complicated than that. What I am really saying to my noble friend is that I am concerned about these diagnostic pathways, who will be doing them, how we will benchmark their qualifications and the quality of the pathways, and how they will be provided given that foundation trusts are not listed in the strategy and that changes are to be made to the structure of the health service through the Health and Social Care Bill.
The other matter I want to raise concerns the professional training of local authority staff. The end goal is to have staff with clear expertise in autism within each area. I am very nervous of tick boxes. I do not want to see a situation where people who have been on training courses tick boxes but we are unable to define what expertise they have or their interface with the autistic community. Therefore, I hope that my noble friend will find a way of evaluating this training to ensure that it is not just a tick-box exercise.
I am looking at the Whip, as I am sure that she will call me to order fairly soon. However, I want to raise a final matter.
I asked my noble friend Lord Freud whether his department had conducted consultation on the Autism Act before introducing the Welfare Reform Act. The Autism Act is a unique piece of legislation. The Department of Health should check whether new legislation that is brought forward by other government departments affects the provisions of the Autism Act. I am concerned about changes being introduced in housing legislation that affect the under-35s and how the strategy for moving towards independent living will work. I do not know whether my noble friend can tell me what discussions his department has had with the DWP but I am seriously concerned that judicial review will be instigated following what I regard as severe defects in other legislation that clearly has not taken the Autism Act into account. I hope that, as the Minister in charge, my noble friend will make it his responsibility to ensure that this does not happen on an ongoing basis.
Lord Touhig
My Lords, I thank the noble Baroness, Lady Browning—indeed, I am proud to call her my noble friend—for securing this debate today. Those concerned about autism and how we support people with autism and their families have no better champion in this House than the noble Baroness.
All too often in my experience, the public perception of the need to make provision to support people with autism is that it is a matter for the education services alone; it is about helping autistic children. But, of course, while providing educational opportunities for autistic children is vital, necessary and right and proper, I fear that it sometimes masks our appreciation that autistic children grow up into autistic adults, and the support is needed for adult life as well. All too often, I fear that our approach focuses on early years alone, and that is often seen as our priority. It is right that it should be a priority, but it should not be the priority to the exclusion of all else.
When I spent a day at the National Autistic Society’s day centre in Croydon a couple of months ago, I saw for myself how the team there is making a real difference to the quality of life of autistic adults but, like many others, I am concerned about the step before: the support given during the transition from childhood to adulthood. It is often taken for granted that people should be able to move in and out of education throughout their lives. We have to ensure that people with autism have the opportunity to be able to continue to access education throughout their lives and that it is a given right, not a gift which society may or may not bestow from time to time.
The need to improve the transition to adulthood for people with autism is mentioned in the autism strategy, but as far as I can see it contains no concrete proposals to deliver these improvements. I know that Ambitious about Autism has asked the Government to recognise that a good transition to adulthood delivers long-term cost savings to the state, as well as increased life chances for people with autism and their families. Good links between health, social care and education services are essential to a good transition. The current lack of reference to education in the autism strategy is, I think, worrying us all. I would like to see the review of the strategy next year lead to the inclusion of education services.
In its Finished at School research paper, Ambitious about Autism found that just one in four young people with autism goes on to any form of education or training beyond school. It also found that where young people with autism are supported to continue their education, they are more likely to live independently and access employment in later life. This reduces pressure on adult health and social care services. Until local commissioners and those driving the strategy nationally invest in making further education and training accessible to young people with autism, I fear we will continue to see them go down the default path into adult health and social care services. Will the Government consider what concrete measures to improve the transition will be included in the review next year?
In previous debates, I have spoken of the worries that the National Autistic Society has had about the proper guidance, better training and more robust data which services for adults with autism need if those services are not to fail them. A key National Autistic Society concern, which I and others share, is that specialist autism teams such as the Liverpool Asperger Team and the Bristol Autism Spectrum Service will, despite being recommended by NICE, not be commissioned in each area.
The Minister might recall that in a debate on 31 March last year I raised the issue of the National Audit Office investigation into public spending on autism. It found that if such teams are established there is a potential to save money. It estimated that if local services identified and supported just 4 per cent of adults with high-functioning autism and Asperger’s syndrome, the outlay would become cost neutral over time. In addition, it found that if it did the same for just 8 per cent it could save the Government £67 million a year. The Liverpool Asperger Team, which is the longest-standing specialist Asperger’s service in the country, currently reports identification rates of 14 per cent. Four per cent therefore seems a very achievable figure for newly established autism teams, and a cost-neutral level of service is an entirely realistic prospect. How will the NHS Commissioning Board ensure that clinical commissioning groups are given guidance on commissioning services, particularly specialist autism teams, for adults with autism? What steps are being taken to improve data protection and training for professionals in the NHS, and is autism being included in these discussions?
I have a couple more questions. The draft NICE guideline states,
“that the Care Quality Commission will monitor the extent to which Primary Care Trusts … responsible for mental health and social care and Health Authorities have implemented”,
these NICE guidelines. Given this role, will the CQC therefore be involved in the 2013 review? Recently, it was confirmed by the Department of Health that NICE will produce two quality standards for autism, one for children and one for adults. Is there a timeframe for when we can expect these standards to be published? Finally, how can stakeholders be involved in the development of these standards?
This debate has given us an opportunity to put these questions and I fully appreciate that the Minister might wish to reflect a bit further and write. As the noble Baroness, Lady Browning, made clear, this requires ongoing monitoring. If the Act is to be effective, we have to continue to monitor and ask these sorts of questions. I have no doubt that the Minister in his usual good way will make sure that we have an adequate and full response.
Lord Addington
My Lords, I thank my noble friend for raising this subject. I also thank the Minister for taking this on. One feels that something as difficult as being the lead department on this issue should fall on the shoulders of someone who has not been quite so heavily worked over the past few weeks—but I am afraid that that is the way these things fall.
Every time I have spoken about autism, I use a quote about it being a three-dimensional spectrum; that is, it crosses in all ways. When you know about autism, you generally know about one autistic person and then you meet another autistic person. This is true of most hidden disabilities, but is probably more true of autism than any other.
Lord Addington
My Lords, to continue with the speech that I was making, a quote I often use about autism is that it is a three-dimensional spectrum. I am now going to fulfil a promise I made in September last year, when a councillor, Claire Young, gave me that quotation in a meeting run by the National Autistic Society at the Liberal Democrat conference. I know the words; I do not really understand, certainly not as well as others in this debate, exactly what they mean. I have a perception, because I have some experience of those who have worked with autism and of speaking to those who have it, but I will never know as well as they do exactly what autism means: the idea that it is difficult to assess, deal with and help.
Having got a legal responsibility to follow a coherent strategy led by one department, it is important that the others all join in with it. I have a briefing that suggests that although people at Jobcentre Plus have read the relevant leaflet, young people with autism are reporting back that they still have problems accessing the service. This is pretty typical of anybody who deals with a disability of any description: “I have read the leaflet, I know what is in it, and I know what is going to happen”. They are not trained well enough to be flexible and to understand that there is a spectrum of needs, and you must go from one level to another. This is not unusual to autism; it is just that autism may present a set of problems that are very difficult to access, possibly because the person with high-functioning autism may have difficulty explaining their situation, as been put to me by many people. If this is true, you must make sure that the person who is providing the service is properly trained. A leaflet is not good enough.
I have dealt with this before. In the Welfare Reform Bill, we finally got from my noble friend Lord Freud something that I had been after for about 12 years, that is, that the person who makes an assessment must be trained in the disability that they are assessing. This correlates to the Act that we are talking about today. It is part of the continuum. Let us not forget that the Autism Act would not have been necessary if all the other pieces of legislation that merely referred to disability had provided these solutions. When we looked at the online copy of the guidance, 10 Ministers in the previous Government, representing at least half-a-dozen departments, had all signed up to it. That was an admission, shall we say, from the Treasury Bench— I think that that is a good and fair way of putting it, and I do not think it was disagreed with by anybody—that you must co-ordinate.
Autism presents unusual and unique problems. It is not the only set of original and unique problems. That is why I said that I did not envy the Minister his task. He and his department may well be lumbered with breaking the ground for more efficient support for all disability sectors, because this is clearly the way that it should have happened in the first place.
I have also been encouraged to talk about the SEN Green Paper. The noble Lord, Lord Touhig, has mentioned education. Another truism of mine is that if you are a disabled person, choose your parents well and you will get the best out of the system. As I have said before, I still do not think there is a better combination than a lawyer and a journalist. They are the people who will point out that you are breaking the law and then let the world know about it. Too often it requires that degree of pressing and attacking to get people to move. If this legislation works, they will no longer be necessary. You will not be dumped at the end of one process, waiting to be picked up again by another. That continuation is vital. Not only is it important to receive some form of support at school, but also to be handed over to the college or university sector. As I have bored the House before with my findings on the discrepancy between the apprenticeship system and the university system in the way that some disabled groups, with exactly the same people potentially, are dealt with, I will not go into it again here. That type of disagreement and lack of continuity or progress is frequent, sometimes within the same department.
Will the Minister give us an idea of how the Government are monitoring this and of the type of problems they are addressing? This would be very helpful because we are going through a cultural shift and if there are no problems, it means they have not been looked for. They will be there: everybody here knows that the best way to find that one does not have a problem is not to look for it. If the Minister can tell us how the Government are identifying these problems and what they are doing to look for them, I will be much happier about this. It is not the Autism Act’s implementation; implementation across the board and the establishment of good practice for other groups are vital here. I wish my noble friend well in answering this, but it is not easy.
The Lord Bishop of Ripon and Leeds
My Lords, I too am very grateful indeed to the noble Baroness, Lady Browning, for raising this issue; for continuing to put pressure on us to monitor the autism strategy following the 2009 Act; and for deepening our understanding of how autism develops and is regarded within our society. I look forward to hearing details of the 2013 review of the implementation of the Act.
I am grateful for the 2010 statutory guidance to local authorities and health bodies, but I remain alarmed at the slow progress being made on the provision of diagnostic services, especially for adults. I would be grateful if the Minister could tell us what guidance there will be for the health and well-being boards and the clinical commissioning groups as the NHS reforms are taken forward.
I look forward too to the self-assessments of local authorities, which are going to be published by the Learning Disabilities Public Health Observatory in July this year. I am aware of the very different levels of progress being made by different local authorities in how they respond to need and in how they use their own finances in this area. I would be very grateful for comment from the Minister on how the self-assessment project is progressing, and on what assurances he can give us as to the future of the learning disability observatory in the light of NHS reforms. It has a crucial role in the monitoring of learning disabilities in general and of autism in particular.
Successive Governments have worked hard to raise our awareness of autism and I pay tribute to both this Government and their predecessors in raising the issues and in getting us to think about just how autism exists in our society. It remains a disability which is not well understood and can be ignored or even despised by many people. I look for encouragement for a wider expression of the reality of autism. The National Autistic Society does an excellent job in alerting us to the needs of people with autism. It remains true that many people have a very limited concept of what autism is about. I, too, was going to ask about the relationship between the Welfare Reform Act and the Autism Act and how they are seen as working together.
That is not least because I am alarmed by the extent to which people with autism are regarded as unwilling to work or as trouble-makers. The National Autistic Society figures suggest that some 15 per cent of adults with autism are in work. Most people with autism are unable to find work. It is crucial that they are not criticised or rejected as a result of that inability to find the work which many of them would very much like to be part of. Physical disability is often respected by the general public. Social disability is much less easy to understand. The work of the National Autistic Society, which helps us to a deeper understanding of the effects of autism, is welcomed by us all. But we now need much better diagnostic opportunities and understanding of causes.
In my ministry, I have had the privilege of a series of contacts with people with autism and their carers. The noble Lord, Lord Addington, said that once you meet one person who has autism and their carers, you find yourself being introduced to a number of people with autism but they can have very different symptoms and ways in which that autism is expressed. That is one of the difficulties of this whole spectrum of issues. I have spent a good deal of time with people with autism—it is by no means unusual for more than one person in a family to have autism—and have watched the careful supervision provided by their carers. Such carers are among the unsung heroes of our society and we need to do all that we can to support and encourage them.
In the context of this debate, I want to pay tribute to the contributions made to society by those who have autism. There are many skills—specifically mathematical skills, for example—which people with autism are able to share with others. Many have an openness and friendliness which means that they give to society more than they receive. But that is dependent on there being carers around them who are able to encourage and help them to express those skills and qualities which are so deep within them.
In our right concern to protect and support them, we need also to be grateful for what they give. I am very grateful for the work of the National Autistic Society and for the 2009 Act, particularly the self-assessments of local authorities and the way in which those self-assessments are dealt with and responded to. I look forward to the Minister’s response to this debate.
Lord Collins of Highbury
My Lords, I apologise for being slightly delayed in the voting Lobby earlier and for missing a few of the comments, but I picked up their general gist. I too am grateful to the noble Baroness, Lady Browning, for initiating this debate and, just as importantly, reminding us why the 2009 Act was developed. As she rightly pointed out, it recognised that adults with autism were a particularly socially isolated and excluded group, and it is important to keep reminding our society about that. The Act put two key duties on government: to produce, first, the strategy and, secondly, the statutory guidance which noble Lords have referred to. The Government are now committed to reviewing implementation of the strategy in 2013, and it is vital that this review is as comprehensive as possible. Like many noble Lords, I am also grateful to the National Autistic Society for assisting me with the provision of background information, and for the excellent work that it is doing. I pay it a special tribute.
That society has, of course, not been standing still. It has been looking at monitoring progress towards the full implementation of the strategy. It has particularly been monitoring local authorities about the specific tasks within that strategy: the autism lead; working pathways for diagnosis; established partnership boards, which noble Lords have referred to; including the needs of adults with autism in the joint strategic needs assessment; and developing a local commissioning plan. There is also awareness training, which is vital in all service providers because as the noble Baroness, Lady Browning, pointed out there are still things going on which should not be and which are illegal. We also need to broaden that and have, as she said, awareness training in place for community care assessors.
The results of the national society’s own research are patchy, but it appears that many authorities are starting with the easy bits, as your Lordships would expect. A very high rate—74 per cent—have established an autism lead and 55 per cent have established an autism board. Yet when it comes to more complicated steps, such as producing a commissioning plan, collecting information about adults with autism and having basic training, only about one in three authorities has either taken action or is actively pursuing these goals. The society has advised me that it regularly hears from front-line professionals who say that a key challenge in implementing the strategy is gathering accurate data on the needs of their local population of adults with autism. The strategy sets out that the Department of Health would develop a protocol for information-sharing at local level to help improve local data. This is yet to be published. One of my first questions for the Minister is, therefore: what progress is being made in developing this protocol?
I also understand from the society that the health department is currently undertaking a zero-based review of its data returns. Again, front-line professionals have told the society that adding autism into these returns is essential to help them gather the information they need to plan for cost-effective services. The society is aware that the department has been discussing adding information on autism. What progress is being made to ensuring that data on autism will be collected as a result of the zero-based review?
One important area that the noble Baroness, Lady Browning, and my noble friend both referred to is of ensuring access to diagnosis, which is the cornerstone of the autism strategy. This is also an issue which, to date, very few areas have been able to address successfully. This is one of the areas which I want to focus on. As we have heard, NICE is currently drafting a guideline on the most effective way to develop a local diagnosis pathway, as well as the most effective interventions for adults with autism, which would of course help. However, professionals are telling society—I also read about this at the weekend in an excellent article on autism in the Observer—that a key barrier for developing local pathways to diagnosis is trying to engage the local NHS in local implementation plans. In this respect, the blame is being partly laid on the NHS reorganisation.
I would like to repeat the question posed by the noble Baroness, Lady Browning, to the Minister: as NHS reforms are taken forward, will guidance be developed for health and well-being boards and clinical commissioning groups about the Autism Act? As the noble Baroness has already pointed out, there are already failures in understanding the true nature and requirements of that Act, and we need to ensure that it is understood at all levels as a consequence of the reorganisation.
As we have heard, many aspects of the strategy’s objectives also realise the full potential of people—both children and adults—who are autistic. As many, including the National Audit Office, have identified, the implementation of this strategy will save money: it will save the public purse. I would like to once again stress the question posed by the noble Lord, Lord Touhig, to the Minister: what progress is being made by the Department of Health in developing guidance with professionals on the business case for local teams? What action is the Department of Health taking to encourage the development of these teams locally? Will the barriers to developing these teams be considered as part of the 2013 review of the strategy?
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I thank my noble friend for tabling this Question and pay tribute to the way in which she has championed the cause of those with autism in its various forms over many years. This debate has done full justice to the key issues facing us at the moment. It has also generated a great many questions and I shall do my best to answer as many as I can but I shall inevitably need to write to noble Lords on some of them.
The Autism Act was a landmark piece of legislation. As my noble friend said, it was the first ever disability-specific law. It led to the development of the adult autism strategy and statutory guidance for local authorities and the NHS. The strategy made it clear that to be a success, it would require long-term cultural change. We need to remember that this is not going to be an overnight process. It also requires action right across the public sector.
Since then, we have had some real successes; for example, the North East Autism Consortium regularly brings together local authority and NHS lead commissioners for autism to share their experiences and to drive forward their priorities, all the while involving people with autism in the process. Personal budgets have begun to make a real difference to people’s lives. They have a degree of flexibility that enables people to be creative about how they spend their money. People can make every penny count and get real value for money.
A central tenet of the autism strategy is that adults with autism should be able to access the same services as everyone else. If someone with autism is being assessed for social care, their autism should be taken into account, regardless of their IQ, and I will turn to that point again in a moment. If they are looking for work, Jobcentre Plus should find suitable positions that are sensitive to their needs. To reap the full potential of the Act, local authorities and the local NHS need to work together and co-operate on planning and training, on the identification, diagnosis and assessment of autism, and on the transition from childhood to adulthood. I will come on to some of those themes in a moment.
While the lead must come from local communities, more still can be done to help at the national level. We recently announced a new children and young people’s health outcomes strategy, which is aimed specifically at developing the life chances of young people. To support this, we have established a children and young people’s forum, under the leadership of Christine Lenehan, chief executive of the Council for Disabled Children and Ian Lewis, medical director at the Alder Hey Children’s NHS Foundation Trust. Last April, we published new tools for local authorities and NHS bodies to support communities with the implementation and monitoring of the strategy and the statutory guidance.
The learning disability public health observatory has been finding out from local authorities just how they are delivering the strategy. The results will be published at the end of the month, enabling people to lobby locally and to challenge where necessary. So far, about nine out of 10 areas say that they have a commissioning plan for services for adults with autism either in place or in development. More than half the local authorities in England have established autism partnership boards to ensure that the views and wishes of people with autism and their carers inform the design, development and commissioning of services at a local level.
While central government can set the framework and work to remove barriers and increase awareness, the real work—the delivery of lasting change—is for professionals, providers, voluntary organisations, service users and carers working together in collaboration. The autism strategy has never advocated a top-down process. It is not about setting targets and milestones. It has always been about empowering local communities to come together and to get things done. It is also about integrating care across the NHS, social care and other local authority services, and putting people with autism at the centre of any plans to improve their own lives and, as much as possible, to put them in control. The new health and well-being boards will be crucial to integration. They will bring together all those with an interest in local health and social care. They will draw up the local needs assessment. Crucially, they will also write the local strategy to meet those needs and be responsible for fulfilling it.
A huge amount of work has taken place over the past couple of years. Consistent pathways for diagnosis are being delivered through the NICE clinical guidance for the diagnosis and management of autism. Newly diagnosed patients are being given appropriate advice and information. Lead professionals have been appointed in most local areas to develop diagnostic services. We now have NICE guidelines covering the diagnosis, referral and management of autism among children and young people. Similar guidelines for adults are out for consultation and are due this summer. The proposed adult autism quality standard has now been referred to NICE and an announcement on further referrals following this engagement exercise will be made shortly.
The noble Lord, Lord Collins, paid tribute to the work of the voluntary sector and, in particular, the National Autistic Society, and I would like to echo what he said. The society is now in its 50th year, and there is no doubt that its lobbying, research, advice, support and services do a huge amount to set the standard for autism services and to drive system reform. I would like to thank it and many other organisations that work to improve the lives of people with autism. Alongside them, we have to thank the parents, carers, teachers and friends of those with autism.
My noble friend Lady Browning asked me specifically about the question of someone’s IQ. The strategy and guidance make it clear that people with autism or Asperger’s syndrome can no longer be refused an assessment or access to support because their IQ is too high and they do not have a learning disability. She is aware of that.
We expect more low-level and preventive services to be developed in response to the autism strategy and statutory guidance as commissioning plans are developed locally and a better understanding of local needs is developed. Given the right support, many more people with autism, particularly those with high-functioning autism or Asperger’s syndrome, will be able to live more independently in the community. Some areas, such as Liverpool and Bristol, have developed multidisciplinary teams that help with diagnosis and post-diagnosis support and their expertise can greatly increase awareness of autism among other services. The NICE guidelines, which will be published this year, will look at the use of these teams in more detail.
A number of noble Lords, including my noble friend, the right reverend Prelate, and the noble Lords, Lord Addington and Lord Collins, spoke about the need to raise awareness and expertise at a local level among front-line professionals. The Department of Health has funded a series of online training resources and booklets to increase awareness and understanding of autism across all public services, costing half a million pounds in total. Working with the Royal Colleges of Nursing, GPs and Psychiatrists, the Social Care Institute for Excellence, the British Psychological Society, Skills for Health and Skills for Care, the NAS and others, a range of quality materials to enable front-line staff to better recognise and respond more effectively to the needs of adults with autism have been produced. We are planning further work with our partner organisations to ensure dissemination and uptake of this material. It is, however, important to emphasise that it is for local health and social care organisations to ensure that professionals involved in providing services have the necessary qualifications, expertise and training for the purposes that are required.
My noble friend referred to local governance structures. Those structures are in place, including the partnership boards. Local JSNAs and autism self-assessments should also provide information for local service users and representative groups to benchmark provision within their localities and identify where there are gaps. A key issue is to explore whether local health and care commissioners and providers are taking forward services in line with Implementing Fulfilling and Rewarding Lives, the statutory guidance which was published in December 2010, and to challenge locally where that is not happening.
The right reverend Prelate referred to self-assessment. He is right that we have asked the learning disabilities public health observatory to collect and collate data from the reports that are coming out of self-assessment. Those will be online by the end of this month. I am confident that this is a step in the right direction. Almost 90 per cent of local authorities have submitted a report, which is encouraging.
Clinical commissioning groups were referred to by the noble Lords, Lord Collins and Lord Touhig, among others. The NHS Commissioning Board will be issuing guidance to the CCGs. That may be for a variety of purposes, including to support improvement of outcomes in the NHS outcomes framework, within which are indicators on long-term conditions and mental illness. However, I am careful not to refer to autism as a mental illness. Health and well-being boards and CCGs will be expected to ensure that they comply with all relevant legislation included in the Autism Act.
I am receiving signals that my time is almost up. I apologise to noble Lords as I have a great deal more material here that I would gladly have used. I just highlight two essential priorities for us. We need to benchmark the services and outcomes for people with autism. We have made a start with this through the self-assessment tool. We need better information to plan and commission services, robust local prevalence data on autism and up-to-date joint strategic needs assessments so that services can be commissioned appropriately. By being clear and transparent at every stage we can hold local authorities, the local NHS and others to account for the quality of the services that they are delivering. As we devolve power down, place far more focus on local leadership and personal control and work to drive up outcomes, it will not be only the statistics that start to look better but also the lives of people with autism.